Auriana Charbonneau, an 8-year-old girl from Honokaa, Hawaii who’s been fighting a brain tumor and travelled to Michigan for proton therapy over the summer, just completed her last session earlier this month.

At 2 years old, Auriana underwent surgery to remove a tumor that caused headaches and loss of vision in her left eye. Due to its location, doctors felt additional surgery was no longer viable, fearing neurological damage or death. Ten months prior to her treatment in Michigan, an MRI scan showed her tumor was growing. After her parents and doctors researched options, the 8-year-old was brought to Royal Oak, where she spent six weeks being treated with proton therapy, more than 4,000 miles away from home. Her prognosis is positive according to her doctor at Beaumont: “Her future, decades down the road, looks bright. For an 8 year old, she really is an amazing patient. I was so impressed by her maturity, attitude and courage,” she said. 28 treatments later, her father Matthew, who lived in Oakland County until he was 6 years old, said the decision to bring Auriana to Beaumont was “all worth it.” “Auriana got to know most everybody at the Proton Therapy Center, the staff and medical team,” he said. He added the visit was a chance to show his wife, son and three daughters his roots in Metro Detroit.

A Norfolk business has set a fundraising target of £1500 to help a family hold a Christmas event to raise funds for their son’s treatment.

Harry Addy, from Rivermead, Stalham, has a spinal cord tumor and his family need to raise £70,000 for specialist Proton therapy treatment overseas, as it’s not available on the NHS. They have already raised £23,000. The seven-year-old had an operation to remove the tumor and now has leptomeningeal disease in the center of his brain. Doctors have suggested he has radiotherapy treatment in the UK, but his parents Jamie and Melanie Addy feel he’s too young and want him to undergo less invasive treatment in Germany. A spokesman for Stalham’s Daddy Donuts dessert parlour said: “We are helping Harry’s family to hold an event this Christmas to help raise funds for his treatment. The £1,500 will help promote it and go towards catering and decorations.” If you wish to help Harry, please visit his Just Giving page on www.justgiving.com/crowdfunding/daddydonuts.

After winning a protracted and gruelling 2-year battle with brain cancer, 16-year-old Ben Lepisto has made a triumphant return to the soccer field, understandably as a different player than the one he was before being diagnosed.

Ben was diagnosed in March 2016 with stage IV brain cancer after he experienced sporadic headaches, nausea, lethargy, fatigue and uncharacteristic irritability. Doctors placed a shunt in his brain to alleviate swelling and removed his tumor during a seven-7 surgery. A gruelling regimen of targeted proton radiation therapy and aggressive chemotherapy followed. Now cancer free, Ben has to deal with the damage the cancer caused: he can sometimes slur his speech, be forgetful, become confused or have difficulty with his balance. “It’s difficult for us to see how he was compared to now, but he’s getting there and doing the best he can and he’s trying to keep up with his peers, which I think is really important,” his mom said. Ben, who has played soccer for nearly a decade and showed promise 4 years ago on the high school’s freshman team, worked tirelessly to position himself to return to the pitch following multiple surgeries and after enduring countless rounds of radiation and chemotherapy. “I can’t do most of the stuff I did when I was younger,” Ben said. “I’m not the biggest kid on the field anymore, nor one of the fastest. I’m just another kid out there, and that’s been kind of frustrating in a sense, but it’s really nice to play again. This is what I need in my life, I need to be out there with my friends competing.” The Woodbridge school-community looks upon Ben as a hero during every month of the academic year, but his presence in the building has added meaning in September, which is National Childhood Cancer Awareness Month.

The parents of Amelia Elphee, a 4-year-old from West Yorkshire in the UK, are raising £3,000 to help fund overseas living expenses and outings to make her proton therapy treatments for a cancerous brain tumor a more positive experience.

“My daughter Amelia has just been diagnosed with a high grade neuroepithelial brain tumor with MN1 alterations. This is a rare kind of brain tumor with around 30 children affected in the whole of Europe. This means we have to travel overseas to receive Proton Therapy. We have been told that Proton Therapy is the best option for her rare type of tumor and that she is eligible to receive this treatment funded by the NHS. The funding covers travel, accommodation and treatment but does not cover meals, laundering, toiletries, comforts for Amelia whilst there and other living expenses. We are expected to be overseas for a total of 9 weeks, this is going to be a challenging time for us as we will be away from home comforts and the support of family / friends. This overseas treatment is an expense that we were unprepared for as Amelia has to start treatment as soon as possible we have not had time to save up. Any donation big or small would be extremely appreciated. I have decided to create a blog capturing every step of Amelia’s journey from beginning to end to raise awareness of childhood brain tumors and to provide comfort and support to others that are going through similar experiences. This blog will include diaries, photos, videos and resourceful information. Thank you for reading our story.”

While brain tumors are rarely diagnosed in children, they are the most common form of solid tumors found in those younger than 15. All together they represent 20% of childhood cancers.

When a brain tumor is found, treatment may include surgery, chemotherapy and/or radiation. Although survival is job one, it is important to consider the treatment’s long-term side effects. Radiation can, for example, damage healthy tissue and contribute to the development of different forms of cancer later in life. It’s important that the medical team weigh a treatment’s side effects and potential harm with its benefits. Children with brain tumors often are treated with radiation, either with standard (X-ray) radiation or proton therapy. Both types attack tumors by preventing cancer cells from dividing and growing. “The fundamental property of X-rays,” says Dr. Ramesh Rengan, the medical director of Seattle Cancer Care Alliance Proton Therapy Center, “is that they go in one side and they come out the other. That rule changes with protons. With protons, we have the ability to deliver a therapy that enters but does not exit. It stops where we want it to stop.” As a result, protons allow to spare vital healthy tissue surrounding the tumor, and thus have the potential to reduce both short and long-term side effects, which is particularly important in the treatment of children.

Shortly after turning 50, David Hennessy began monitoring his PSA levels, which may indicate prostate cancer when detected at higher levels. Now 2 years after the end of his treatment, David wants to stress the importance of regular screenings.

When David’s doctors noticed his PSA level rising, a biopsy confirmed prostate cancer. “The biopsy showed that I had cancer, and I am fortunate in that the cancer appeared to be confined and treatable after being caught early,” he said. After much research and seeking multiple opinions, David decided that proton therapy was the best option for him. Because of the treatment’s pinpoint accuracy, which can minimize damage to healthy tissue, men get the benefit of extremely precise tumor targeting with a lower risk for potential side effects. Proton therapy helps prostate cancer patients maintain their quality of life, which was a major component in David’s treatment decision. According to the American Cancer Society, 1 in 9 men will be diagnosed with prostate cancer in his lifetime. Men with early stage prostate cancer often experience little to no symptoms other than a rise in PSA. “When I found out I had cancer, I promised myself that I would spread the word that screening is so important. Most men are stubborn and feel bulletproof and won’t get their PSA tested. PSA is a simple, painless blood test. Tell your brothers, fathers, sons, uncles, friends to get checked.”

]]>http://www.proton-therapy-today.com/weekly-web-review-week-38-4/feed/0WEEKLY WEB REVIEW – WEEK 37http://www.proton-therapy-today.com/weekly-web-review-week-37-3/
http://www.proton-therapy-today.com/weekly-web-review-week-37-3/#commentsMon, 17 Sep 2018 09:00:48 +0000Anne-Sophiehttp://www.proton-therapy-today.com/?p=13746Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is helping cancer kids in their battle against cancer, and their family to speak out during the Childhood Cancer Awareness month.

TEEN ON CHARITY RUN AFTER BEATING CANCER

Sam Varnam, a 17-year-old teen from Codnor in the UK, is taking on a 10-km obstacle course this month to raise funds for the charity that helped him through his cancer treatment.

In February 2017, Sam was diagnosed with olfactory neuroblastoma, a cancer of the nasal cavity. He spent most of last year in hospital for chemotherapy and surgery before flying to Florida for proton beam therapy, all while doing his GCSEs at Heanor Gate Science College. Now working towards A-levels in media and psychology, Sam said: “It was a tough time for my whole family. We were worried, scared and didn’t know where to go when I was first diagnosed. “Then a friendly face approached us, a Teenage Cancer Trust support worker called Bex. She eased us into the whole process, calmed us down and made the hospital feel more like home.” Sam will run in the Wild Warrior event near Brailsford on Saturday, September 22, in aid of the Teenage Cancer Trust. It will mark the latest step in his recovery. Now in remission, Sam said: “Before I was diagnosed I was an outgoing, active sporty person and now I have finished my treatment I have reprised that role. I’ve always wanted to run an obstacle course, and after this shock to the system I have finally decided to do it.” He added: “It’s a brilliant opportunity to help give back to the charity that helped me out so much, so they can give the attention and care they gave me to every other teenager with cancer in the UK.”

Jaxon Dugger, an 8-year-old boy from Oklahoma who is battling a brain tumor for the second time, is still smiling despite the pain he’s endured since he was a toddler.

Jaxon was diagnosed when he was only two, after his parents noticed he was having trouble walking and he started falling. An MRI revealed a rare and dangerous brain tumor pressing on the part of his brain that controls motor functions, and further tests confirmed it was Ewing’s Sarcoma. For Jaxon, that meant surgery to remove the tumor followed by some of the strongest chemotherapy medications available. On top of that, he received 31 rounds of proton radiation at ProCure Proton Therapy Center. Jaxon experienced some of the harshest reactions to his treatment. He ballooned to three times his normal weight despite losing his appetite and finding it impossible to eat. He ended up in rehabilitation, learning to walk again, but even after all of that, Jaxon was still smiling. Unfortunately, this wasn’t the last bad news he and his family would receive. In 2015, an MRI revealed his tumor had returned and he’s been fighting it ever since. “He thinks and believes that this is something we can keep fighting, that he will eventually be cured,” said his doctor, shaking her head in amazement. His mom J’Cinda recalls the news the tumor had returned, “He said ‘Mom, don’t cry! I’ll beat it again!’” We could all learn something about love, endurance and hope from Jaxon.

The Lewis family from Fort Meade, Maryland, is spreading awareness about childhood cancer, after they received the news that their son Thomas was suffering from a brain tumor when he was only 6 years old.

September is Childhood Cancer Awareness month, putting a spotlight on a disease that affects so many lives: each day 43 families in the US will receive the devastating news that their child has cancer. On March 28th, 2016, Amber and Derek Lewis took their son to the doctor after he had been complaining about headaches. They found a large mass in his brain and Thomas was diagnosed with a desmoplastic round cell tumor, a rare form of cancer that is usually found in the abdomen. From there Thomas’ battle with cancer began. “I had to go to the hospital,” he recalls. “Sometimes I had to go for two days or three.” After several rounds of chemotherapy and proton therapy, there was no evidence of the disease. And the Lewis family is holding on to every precious moment they can spend together. To help spread awareness, the Lewis family is going gold. They are participating in the Million Mile, a national challenge to walk, run or ride a million miles during the month of September hoping to help raise money to help other families and to help spread awareness that unfortunately, this could happen to anyone. The Million Mile is the largest childhood cancer awareness challenge in the nation. The money raised helps fund researchers so they can find better treatments and more cures for kids battling cancer.

Audrey Anderson, a 12-year-old girl from Australia who was diagnosed with a tumor at the center of her brain when she was only 5, is now a healthy young girl heading to high school next year.

When doctors found a tumor in Audrey’s brain, her mother Sue says it flipped their family’s perspective of life on its head. Their daughter would die if the tumor was left untreated, but her age and the cancer’s location meant that it would be a particularly fragile operation. “We had to pursue some safe-as-possible options to try and make sure that we could preserve her life as much as possible,” Sue’s mom said. They opted to have Audrey treated overseas using proton therapy. While the treatment is not yet available in Australia, it was the best option to minimize any long-term effects on Audrey’s health. “For young children’s brains it’s a much safer form of treatment,” Sue said. Audrey received treatments for 11 months, from March 2011 to February 2012 with the help of Kids’ Cancer Project, who gave the family an extra boost to stay strong. It’s 7 years on from Audrey’s diagnosis and her mom says she’s now a healthy 12-year-old heading into high school next year, which is a “big achievement”. Ms Anderson herself sits on the board of The Kids’ Cancer Project, which co-hosted an event at the Sydney Opera House to launch the first day of Childhood Cancer Awareness Month. “It’s about honoring children who have been diagnosed with cancer, children being treated and those who have sadly passed away,” she said.

Billy is 15-year-old young man who is fighting cancer for the third time in his life. His uncle is telling his story in the hope to raise £160.000 to fund proton therapy and treat his rare form of cancer.

“Billy is a fighter. He’s already a walking miracle because he was diagnosed with a rare form of leukaemia when he was a small baby. Less than two years after treatment, the cancer returned and he underwent further chemo, radiotherapy, complex treatments and a bone marrow transplant using stem cells. Against all odds, Billy started school at 5 years old and hasn’t looked back. After they had been living by the hospital for so long, my sister and her family returned to normality, determined to put this horrendous ordeal behind them. So, we are devastated that only 10 years later another very different battle has begun as the aggressive treatment that saved his life has now caused another rare type of cancer: chondroblastic osteosarcoma in his face and eye socket. Specialist proton therapy in America is his only option for a cure. Please back Billy. It is his big chance to stop the tumor in its tracks, either by making it benign or small enough for specialist surgery to take place. His life is in front of him. Billy has beaten cancer before. Please help him to do it again.”

Jacob Willett, a 22-month-old boy, was diagnosed with pelvic embryonal rhabdomyosarcoma in March. His parents are fundraising to help their son’s battle against this rare form of cancer.

In response to the cancer diagnosis, Jacob’s parents Mark and Ness Willett went on a fundraising drive to help support others in a similar position. But a change in the direction of Jacob’s treatment has meant the couple’s fundraising efforts have had to start all over again. Mark explained: “Jacob was approved to travel to Florida for NHS-funded proton beam therapy in May, but the treatment was cancelled the day before we were due to fly out. Jacob had been undergoing chemotherapy, and after 4 rounds of treatment he had a scan to see how the tumor was responding. The scan showed a 20% growth instead of any shrinkage. Everyone was shocked, including our consultant, who then explained that our treatment in Florida had to be cancelled as the tumor was now too big.” Immediately after the cancellation, the couple began to fundraise again in the hope of funding the costly proton beam therapy themselves. However, Mark and Ness found out soon after that proton beam therapy was unlikely to be an option at all. With surgery also being ruled out due to the size and delicate location of the tumor, a course of radiotherapy was the only real option left. Jacob completed his radiotherapy at the end of August, after 28 doses under general anaesthetic every weekday morning. His chemo schedule continued alongside that treatment, with eight cycles completed in total. The family are now spending some much needed time at home, and waiting to see what comes next.

]]>http://www.proton-therapy-today.com/weekly-web-review-week-36-2/feed/0WEEKLY WEB REVIEW – WEEK 35http://www.proton-therapy-today.com/weekly-web-review-week-35-2/
http://www.proton-therapy-today.com/weekly-web-review-week-35-2/#commentsMon, 03 Sep 2018 09:00:06 +0000Anne-Sophiehttp://www.proton-therapy-today.com/?p=13673Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is offering hopeful alternatives to cancer patients from all around the world.

PRAYERS ANSWERED FOR LITTLE EVIE

Evie Hughes, a 7-year-old schoolgirl from Wales in the UK who underwent brain surgery and months of pioneering treatment in America, has just returned home after being told her tumor has been successfully treated.

Evie was diagnosed with craniopharyngioma, a rare type of brain tumor that was pushing on her optic nerve, after her schoolteacher recommended that she go for an eye test. Her parents soon learned that their daughter needed proton therapy in the US, and managed to raise money thanks to a fundraising page and the generosity of their community. Now Evie has recovered her vision and has returned to Wales in June after enduring months of proton therapy treatments in Florida, a pioneering procedure that was not available in the UK. “We’ve had the best news,” her mother Heather said. “Now that the tumor has been zapped it is not showing signs of activity!”

Paul Horvath and Gene Muenchausen were strangers, but as they waited in the lobby of the Beaumont Proton Therapy Center, it didn’t take long for them to strike up a conversation. Despite some differences, they soon learned about their many similarities.

Paul and Gene are about the same age, 74 and 73. They learned they were at the center to begin their proton therapy for cancer, and that they would conclude their treatments at about the same time. Monday through Friday for 6 weeks, the two met in the lobby, as Paul was being treated for prostate cancer and Gene for squamous cell cancer. Gene had received traditional X-ray treatments for his cancer, along with brachytherapy, and was pleased with his proton treatment plan and his physicians. Paul, a former steel worker, liked that there were few side effects from his proton treatments. “While undergoing therapy, you can maintain normal activities. I went fishing with my son-in-law on the Detroit River. And Gene rode his bike to the Proton Therapy Center most days. He was golfing, too.” Despite being treated for different types of cancer, they often compared their experiences, or as Gene said, “comparing notes.” Paul said he did a lot of research before deciding to make the long trip downstate for proton treatments. “It’s an individual decision. But, for me proton therapy is the way to go. It’s state-of-the-art and high-tech,” he said. Near the end of their proton treatments, both men teamed up to express their thanks and gratitude to the entire staff. The two ceremoniously rang the end-of-treatment bell together. After 6 weeks, the pair celebrated their cancer survivorship and proton therapy experience.

Robert Ducan, a 64-year-old bus driver from Hornchurch in England, returned to work the day after he finished a 10-day course of proton therapy in the Czech Republic to treat his prostate cancer.

Robert was diagnosed with prostate cancer last May after he began to feel a more frequent urge to visit the bathroom. He was given a PSA test, which measures the level of prostate-specific antigen in the blood. A high reading can indicate the presence of cancerous cells. “To start with my PSA was 6.1 but before long it had gone up to 8.1,” said Robert. “I was referred to the hospital and by then it was up to 13.1. I went to see a specialist who wanted to cut out my prostate completely.” Concerned about the risks, Robert looked for alternatives and discovered proton therapy. After travelling to Prague for blood tests and a MRI scan, he eventually underwent five fractions of treatment across 10 days. “You hear people in England talking about chemotherapy and other cancer treatments having a really tough, gruelling time, so that’s sort of what you expect. But I actually found proton therapy to be quite relaxing. It didn’t feel like I was having cancer treatment at all. There was no pain whatsoever and I would have my treatments in the morning and then I would spend my afternoons exploring Prague. I couldn’t believe how painless it was.” Robert’s PSA level is now down to 0.1 and he says he feels “much better”. “Being a bus driver is not like sitting at a desk, you can’t just nip to the toilet when you need to. I’ve now found a doctor who knows and understands proton therapy and I’ve just had my one year anniversary since treatment.”

]]>http://www.proton-therapy-today.com/weekly-web-review-week-35-2/feed/0WEEKLY WEB REVIEW – WEEK 34http://www.proton-therapy-today.com/weekly-web-review-week-34-2/
http://www.proton-therapy-today.com/weekly-web-review-week-34-2/#commentsMon, 27 Aug 2018 09:00:47 +0000Anne-Sophiehttp://www.proton-therapy-today.com/?p=13606Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is giving hope to cancer patients from all over the world.

LITTLE FIGHTER NEEDS SUPPORT

Chereez Nel, a 3-year-old girl from Boksburg in South Africa who suffers from stage 3 undifferentiated soft tissue sarcoma, needs help to benefit from specialist proton therapy treatment in the USA.

Chereez was diagnosed with cancer after her parents noticed a slight swelling in her cheek. After seeing an ear, nose and throat specialist, the Nel family’s life was turned upside down, as Chereez was diagnosed with an aggressive cancerous tumor next to her brain, spreading from her head to her face. After several MRIs, bone marrow and CT scans, it was planned for Chereez to undergo surgery and chemotherapy, but the treatment plan changed after it was discovered the cancer had penetrated the skull. “Doctors decided not to go through with surgery as they would not be able to entirely remove the tumor due to the involvement of the skull base. The decision was then made to continue chemo and start radiation,” her parents said. Chereez could receive either IMRT or proton therapy, but protons would better spare healthy tissue surrounding the tumor, limit the side effects, and reduce the need of post treatment reconstructive surgery. “Proton therapy, unfortunately, is only available in the USA with costs running into the millions. This excludes any accommodation, living and travel expenses or more chemotherapy that might be needed when in the USA,” Chereez’s mom said. Luckily, the community has come together to help Chereez and her family where possible and a non-profitable fund has also been set up. “We believe that our daughter will fight this cancer with all she has and we believe she will be healed,” said her mom.

The New England Revolution, an American professional soccer club, honored Cooper Martin, an young Acton native who was diagnosed with a cancerous brain tumor in December 2016.

Since being diagnosed, Cooper has undergone surgery, proton radiation therapy and chemotherapy, which concluded in early 2018. Now entering the second grade, Cooper looks forward to getting back to playing soccer this September. Cooper was honored during the Revs’ “Kelyn’s NEGU Crew” program during the Aug. 11 game against the Philadelphia Union with a post-game walk around the field alongside Kelyn Rowe as he thanked the fans. Kelyn’s NEGU Crew” is a program that gives young cancer patients associated with the Jessie Rees Foundation a gameday experience. This initiative was spearheaded by Revolution midfielder Kelyn Rowe, a longtime supporter of the Jessie Rees Foundation. The acronym NEGU stands for “Never Ever Give Up”.

Nigel Bell, a retired businessman from Plymouth in the UK, has been given the all clear after he took matters into his own hands and travelled to Prague to get £30,000 specialist proton therapy treatment for his prostate cancer.

Nigel, a 74-year-old grandad-of-two, was diagnosed with prostate cancer eight years ago. He was initially monitored by doctors to see how the cancer developed, but things took a turn and two years ago it became clear it was time to take action. Doctors told Nigel he would need traditional radiotherapy. “They told me that I had an 80% chance of success with radiotherapy, but a 20% chance of either failure or complications. I’m not a gambling man, so I decided to look at other options,” Nigel said. Traditional radiotherapy can carry a risk of erectile dysfunction and incontinence, whereas proton therapy is able to spare surrounding tissue, meaning fewer side effects, but the treatment is not yet available in the UK on the NHS. Nigel had an initial consultation with the Proton Therapy Center in Prague, Czech Republic, who agreed they could treat his case. He said: “I found everything over there to be really easy. Having accepted I was suitable they confirmed the price, around £30,000. It was a lot of money but it was far cheaper than the US or what they are offering at the new private proton therapy center in South Wales.” Nigel spent 5 weeks in Prague having 21 fractions of treatment, and his PSA level is now down to 0.25. He said: “As far as the doctors are concerned they have cleared the cancer. My prostate cancer has been eradicated with little or no side effects, just a little soreness for a few weeks.”

]]>http://www.proton-therapy-today.com/weekly-web-review-week-34-2/feed/0WEEKLY WEB REVIEW – WEEK 33http://www.proton-therapy-today.com/weekly-web-review-week-33-2/
http://www.proton-therapy-today.com/weekly-web-review-week-33-2/#commentsMon, 20 Aug 2018 09:00:19 +0000Anne-Sophiehttp://www.proton-therapy-today.com/?p=13567Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is helping cancer patients from all over the world overcome life-threatening challenges.

4-YEAR-OLD HEADING TO GERMANY FOR PT

Amelia Elphee, a 4-year-old girl from the UK who is fighting against a rare brain tumor, is set to fly abroad for state-of-the-art cancer treatment.

Last June, Amelia was diagnosed with a neuroepithelial brain tumor, one of only 30 known cases in Europe, following the sudden onset of seizures. Her mom Vicky, said: “When Amelia first suffered a seizure, I thought she may have simply overheated, or that she might have epilepsy.” When she was taken to the hospital, she began having another seizure in front of the paediatrician, and an MRI scan of her brain revealed the root of the problem. “Never once did I think I’d be told she had cancer. To hear those words left me dumbstruck, numb. I just couldn’t take it in,” Vicky recalls. On June 27th, just one week after she began displaying symptoms, Amelia underwent a 7-hour craniotomy surgery to successfully remove the whole 2-cm growth in the upper part of her brain. Two days later she was back at home making a promising recovery. Now, in the week of her fifth birthday, she is set to spend 6 weeks in Essen, Germany to have proton beam therapy. While treatment is funded by the NHS, the cost of living there is not, so Vicky set up a crowdfunding platform in order to raise the necessary money to continue the fight. “Amelia has been an inspiration throughout her treatment. She’s been so strong. And we’re optimistic of a successful outcome following proton beam therapy,” she said. To donate to Amelia’s plight: https:// www.justgiving.com/crowdfunding/ameliaelphee

Simon Hardacre, a 56-year-old dad from Wales, has become the first cancer patient to be treated with proton therapy in the UK. He is the first of many to undergo this pioneering and more targeted form of radiotherapy in the UK.

A year ago, Simon went to see his GP when he began feeling run down and stressed. “While I was there the GP asked me if I’d ever had my prostate checked, to which I said no,” he recalls. “The examination revealed that there was a small lump, so my doctor made an appointment for me to go to the hospital for a second opinion.” Further testing then confirmed that he had an aggressive form of prostate cancer. The diagnosis came six years after he’d been struck down with neck and throat cancer. “The treatment for my previous cancer was a combination of radiotherapy and chemotherapy, which was gruelling and made me extremely ill.” On the NHS, Simon was given the option of either having robotic surgery or radiotherapy for his prostate cancer, with high risk of incontinence and impotence. After doing some research online, he stumbled across proton therapy, which was available just over the bridge in Wales. Simon received proton therapy treatment at the Rutherford Cancer Centre in Newport in April. It is currently the only clinic in the UK where the groundbreaking treatment is available. “It’s brilliant that we now have a world-class facility here in the UK where patients like myself can be treated. This was a game-changer for my own cancer treatment, and I’m sure that this will transform the outlook for many other patients up and down the country.”

Here is the story of Ed Malewitz, a cancer survivor who was diagnosed with adenoid cystic carcinoma at the base of his skull and was successfully treated with surgery and proton therapy.

At the beginning of 2013, Ed Malewitz from Houston, began experiencing frequent nosebleeds and nasal congestion. By 2015, he was undergoing testing to find the cause of those nosebleeds, and the ENT (ear, nose and throat) physician referred him to a rhinology specialist. It was decided to perform surgery to obtain a biopsy. During the 6-hour surgery, the rhinologist discovered and removed an egg-sized tumor in Ed’s nasal cavity. The tumor was an adenoid cystic carcinoma, located near his optic nerve on the right side of his sinus cavity at the base of his skull. “Since it was very close to my optic nerve, they told me I might lose some of my vision from my right eye and maybe my left eye,” Ed recalled. To complete treatment and ensure that no cancerous cells remained, his physician highly recommended additional proton therapy treatment. Ed completed a total of 33 treatments over a 6-week period at the MD Anderson Proton Therapy Center. With proton therapy, doctors were able to precisely target the cancer cells in Ed’s nasal cavity while sparing his eyes and brain. The side effects were minimal allowing him to go to work every day. Now, Ed is back to doing what he loves — astronomy and photography. “I came through it without damage, without scarring. I came through it with my vision intact.”

Lily Douglas, a 10-year-old girl who has recently returned from a 10-week trip to America where she received proton therapy to eradicate Ewing’s Sarcoma, was the guest star at a dance awards ceremony in London.

Lily was diagnosed with an aggressive form of cancer after her mom noticed a sore lump on her shoulder and suspected a dance injury. But after being rushed through tests, Lily and her family got the devastating news the she had stage 4 Ewing’s sarcoma with just a 5% chance of survival. Since then, she has undergone over 100 intensive courses of gruelling chemotherapy as well as a major operation to remove her shoulder blade. Most of her treatment was carried out at Edinburgh Sick Children’s hospital but it has also seen her travel to the US for pioneering proton therapy. Luckily, Lily was told in April that she was cancer free and last week, she was one of 20 children and young people to be selected as special ambassadors for the awards, to celebrate their strength and courage. The youngster walked down the red carpet at the Cancer Research UK Kids and Teens Star Awards, held in partnership with TK Maxx. She took part in a fun-packed day of activities with her family, including a Hollywood-style Walk of Fame, a magician’s workshop and acrobatics skills training. The youngster, who has around 90 trophies and 200 medals from her career in ballet, street dance, modern and tap, also got the chance to show off her dance moves. “It was amazing, a really good experience,” said Lily. “When I got up to dance on stage, I was so happy. It felt like a dream come true.”

For the third year in a row, Jessica and her mother have made bracelets for all participants of Team Rynkeby Østjylland, including her own father, who this year is making his third trip to Paris for the benefit of children with critical illness.

Jessica was just 7 months old when she was diagnosed with an extremely rare and highly aggressive brain tumor. At that time, doctors estimated that she would not live to be more than one year old. Now she is the person in the whole world who has lived the longest with the type of tumor she has. Since her infancy, Jessica has undergone several intensive chemotherapy treatments and is currently having proton therapy, but the tumor cannot be removed. The tumor and the intensive treatment have given Jessica a brain injury, which means that she cannot be alone and requires constant support. She quickly becomes tired and can only go to her special school for three hours a week, play dates last a maximum of 45 minutes, and if her parents need to run an errand together, a childminder must be booked. At the moment, however, her condition is stable. “Jessica is stable and progressing in a positive direction. Both cognitively and physically, she is in progress. But the tumor is stable,” says her mom. Together with her mother, Lise Henneberg, the 10-year-old girl took her position in the sunshine atop Mur de Huy and waited expectantly for the yellow-clad charity cyclists from Team Rynkeby Østjylland. Jessica has become a mascot for the team – a girl who helps motivate the participants to make an extra effort for the sick children.

When Dom Raban’s daughter was diagnosed with cancer at the age of 13, the lack of clear information available left her feeling isolated and ignored. Six years on, her dad has created an app to help other young patients facing similar challenges.

Issy was diagnosed in November 2011 with Ewing’s sarcoma, a rare form of bone cancer. She underwent 18 rounds of chemo and received proton therapy in Florida, which was funded by the NHS. Issy has now been cancer-free for six years. Looking back on the time she was treated for her cancer, two things became apparent to her dad Raban: one, the clinical care she received was excellent; two, the information she was given about her condition was seriously lacking. And when Issy went online to better understand her situation, she was overwhelmed with frightening information, including details of her survival chances, 20%. Her dad says she is still haunted by the lack of information she received at the time: “While Issy is doing really well, she has this deep mistrust of the health service.” Keen to bridge this gap, Raban has developed an app called “Patient’s Virtual Guide” to help inform young patients who are going through similar experiences. The app uses games, graphics, augmented reality, artificial intelligence and text written by medical writers to guide patients through a virtual hospital. “It’s about communicating health information in a way that makes children feel engaged with the treatment they are receiving,” says Raban. “Evidence suggests that if you put information in the hands of patients, they experience reduced stress and anxiety, which can lead to better clinical outcomes.” The app has received funding from the NHS and will be trialled in Royal Manchester Children’s Hospital this autumn.

]]>http://www.proton-therapy-today.com/weekly-web-review-week-29-3/feed/0WEEKLY WEB REVIEW – WEEK 28http://www.proton-therapy-today.com/weekly-web-review-week-28-3/
http://www.proton-therapy-today.com/weekly-web-review-week-28-3/#commentsMon, 16 Jul 2018 09:00:23 +0000Anne-Sophiehttp://www.proton-therapy-today.com/?p=13501Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is helping patients from all over the world battle against cancer.

SUPER SID’S MOM THANKFUL FOR SUPPORT

The mom of Sid Earley, a 7-year-old schoolboy from the UK who was diagnosed with a rare brain tumor called ependymoma, has thanked their local newspaper’s golden-hearted readers for all their support.

Sid underwent a 10-hour surgery on his brain after he was diagnosed with ependymoma, a rare, large cancerous tumor centered around his brain stem. He must now receive intensive proton therapy in Jacksonville, USA, at the rate of 30 minutes of treatment, Monday to Friday for 10 weeks. Although the NHS have agreed to fund his treatment, they will not be able to cover the living costs or the cost of flying out his identical twin brother Mac, which devastated his mom Alex and dad Simon. However, after a campaign, hundreds of people stepped up to raise cash to keep the inseparable pair of brothers together. £13,631 has been raised of the £5,000 target and Mac can now travel with the family to Jacksonville. Alex said: “We have just been totally bowled over by the support shown to our family. For us it was never an option to travel without Mac. You know the first time Sid walked after his operation was when he saw Mac, the difference it made having his brother there was unbelievable. I’m unbelievably grateful of the generosity and kindness shown to us and I just don’t know how I can thank everyone individually.” Last week Sid and Mac were awarded Primary School Pupil of the Year at the Wirral Globe School Awards.

Debbie Hall, 49, is a police constable from the UK who won’t accept her terminal cancer diagnosis. Fighting for her life with the help of friends and colleagues, she is getting closer to her £75,000 target to fund groundbreaking treatment.

Debbie has been hurt by cancer before. In 2007 her mother Hilda died at 58 of breast cancer. Fifteen years ago Debbie was diagnosed with the same condition and underwent a mastectomy, radiotherapy and chemotherapy. In 2015 tests revealed that she had bone and liver cancer. After chemotherapy, her tumors reduced in size but by the beginning of this year they had grown again, making the search for other options more urgent. In Germany there is the possibility of proton therapy, which attacks tumors with a radiation beam, and immunotherapy, which boosts the immune system. “Christie’s hospital have informed me that there is another treatment they can consider. They’re looking at putting me on targeted therapy, which potentially could run quite well with proton therapy,” Debbie says. In March, her colleagues launched a campaign to fund groundbreaking treatment in Germany. About £54,000 of the £75,000 target has been raised. “The people that are supporting me: my friends, family, the police family, people I don’t even know. I just can’t put into words how it makes me feel. I’m so grateful to everybody.” To support the fundraising campaign for Debbie, visit www.gofundme.com/help-save-debbies-life

Raising awareness of childhood cancer is often just as important as raising money for more vital research. That’s why Oscar’s mother is sharing the story of her son’s battle against cancer.

“Oscar was born in June 2014. He was a normal healthy happy little toddler. So in June 2017, we were shocked beyond belief to receive the worst news any parent could ever be given. Oscar was diagnosed with rhabdomyosarcoma of the right temporal fossa. Our world was completely shattered. Within days of diagnosis, Oscar was admitted to hospital to receive round one of 13 sessions of chemotherapy. On 28th November, Oscar’s mass was surgically removed, but due to inadequate healthy tissue margins, he would still need proton therapy to hopefully reduce the risk of relapse. So in February 2018 we flew out to Germany to start proton therapy. We lived in Germany for 7 weeks while Oscar received 28 sessions of treatment while under general anaesthetic, 5 days each week. This was Oscar’s final course of treatment and on our return to the UK, he finally got to ring the End of Treatment bell. As a family we have been to hell and back, but Oscar in true ‘superhero style’, has shown tremendous courage throughout and has never complained. He has struggled with terrible sickness, joint pain and fatigue, but this hasn’t stopped him from always having the biggest smile on his face and filling the room with his infectious laugh. Oscar is doing really well now and life is slowly returning to some kind of normal. We know we are one of the lucky ones.”

]]>http://www.proton-therapy-today.com/weekly-web-review-week-28-3/feed/0WEEKLY WEB REVIEW – WEEK 27http://www.proton-therapy-today.com/weekly-web-review-week-27-3/
http://www.proton-therapy-today.com/weekly-web-review-week-27-3/#commentsMon, 09 Jul 2018 09:00:39 +0000Anne-Sophiehttp://www.proton-therapy-today.com/?p=13481Check out the latest news about proton therapy: this week, find out how this state-of-the-art treatment modality is helping cancer patients from all over the world overcome life-threatening challenges.

EYESIGHT RECOVERY WITH PROTON THERAPY

Brave Evie Hughes, a 6-year-old from North Wales who was told she would be permanently blind in one eye after she was diagnosed with a rare brain tumor, has stunned doctors to see again thanks to proton therapy treatment in the USA.

Evie was diagnosed after her schoolteacher recommended that she go for an eye test, and an optician found that the youngster was blind in her left eye and sent her for tests at Alder Hey Hospital in Liverpool. After an MRI, her parents learned that Evie had craniopharyngioma, a rare type of brain tumor, and would need proton therapy in the US. They held fundraising events in their community and launched a fundraising page, and raised an impressive £2,500 through crowdfunding along with further donations and events. Now Evie has finished her treatment at UF Health Proton Therapy Institute in Jacksonville, Florida and was able to ring the bell in hospital to celebrate being signed off. Against all odds, her sight is now beginning to come back thanks to proton therapy. Evie’s mom said her returning vision is something doctors have never witnessed before. “I feel like I have won the lottery, better than that even because Evie is starting to see again. All the medical people said she would be permanently blind in that eye. But ophthalmologists in the USA confirmed her peripheral vision is returning, something they have never witnessed before and called it a miracle,” she said. “The doctors won’t be able to say for certain if the proton therapy has been successful for another six months, she’s due to visit Alder Hey next week for a check up and there will be regular visits for the next few months.”

Steven Snyder of Roanoke Rapids in North Carolina, a former proton patient and member of the Brotherhood of the Balloon (BOB), was treated with proton therapy at MD Anderson in 2016.

Today Steven is feeling great and cycles 150-200 miles per week. “I’m as healthy as an ox!” Steve says. “I would like to thank the BOB for guiding me to the data I needed to support my battle with Blue Cross Blue Shield for proton therapy. Also, without reading stories of denials and appeals from former patients and BOB members, I may have given up; those stories gave me hope to fight on… Thank you also for publishing your newsletter. Without it, my health would not be what is it today.” Steve just cycled from the mountains in western North Carolina to the coast, which is more than 500 miles! If you’re interested in learning more about proton therapy, visit the Brotherhood of the Balloon website. If you’ve already received proton therapy for prostate cancer, don’t hesitate to sign up to become a BOB member, it’s free!

Hauli Gray, a mother from Oklahoma who has been battling breast cancer for a year, is celebrating with her family after she was able to ring the bell at the ProCure Proton Therapy Center, signifying she beat cancer.

Hauli has battled breast cancer for approximately a year and has already undergone multiple treatments and surgery. Ultimately, her doctors said they felt like proton therapy was the only real option for her, because her cancer was so close to her heart that they feared traditional radiation would put her other organs in danger. As Blue Cross Blue Shield Oklahoma denied her claim for proton therapy multiple times, she learned in early May that ProCure Proton Therapy Center would cover the costs of her treatment. Last Saturday, she finished her final radiation treatment and had a “ringing of the bell” ceremony, signifying she has beat cancer. “I just finished my last treatment, I had a total of 34 radiation treatments. It’s been hard. I feel overwhelmed, I feel joy right now, I’m so excited,” she said. “I know it’s not completely over, but I just feel like I’ve finished the hard part. This is the happiest I’ve been in a long time.”